My Cousin and her need of help

If you can help, thank you!

A letter from my cousin:

I am once again doing the Great Strides walk to help raise funds for a cure for Cystic Fibrosis. I am asking each of you if you would be willing to donate even $5 for this cause. Every little bit helps. Also, if you can forward this on to your friends, family, co-workers, etc. that would help us get even further. You may also be able to ask your employers if they provide matching gifts. Please go to the website if you'd like to donate or join my team to walk (please leave a comment and I will forward you the address.) I truly have a stake in this as I've had this disease my entire life. I always was pretty mild and able to do anything I've ever wanted to do. As my life progressed, so did the disease. My lungs are getting worse, I'm less capable of doing things that used to come easy to me and I'm finding it really hard to stay strong enough to fight this fight I call life. Of course the love and support of family and friends helps me stay strong and helps me fight, but the research itself is also a vital part of living. This is not "Just a Fundraiser" to me, it's my life. So, please, consider donating any amount that you can to help us find a cure for this miserable disease and help CF stand for CURE FOUND.

Just a little bit to help you see what someone with this disease has to go through on a daily basis to help you understand. This last week and a half I was in the hospital with pneumonia and a "flare up." Being in the hospital consists of IV drug treatments, a high calorie diet, respiratory therapy, lots of lab work, breathing tests, procedures, stress, no sleep, etc. To give you an idea, this is what my "typical day" consists of:

Wake up at about 4:30am to start IV therapy. That first "round" goes until about 8 or 9 am. I either then try to go back to sleep or do some of my other treatments. I have to do my vest treatment which shakes my chest to loosen up the mucus in my lungs to help prevent further infection. This takes about 30 minutes and should be done twice, if not more, each day. I then need to take my other pills that aren't administered via IV. This consists of about ten other medications and inhalers. I also have nebulizer treatments that I have to do in addition to the rest of this which can take anywhere from 15-30 minutes. I have IV meds again from about noon to either 3 or 4 and then I have a break again for another eight hours.

A new thing I came home with this time is steroid induced or Cystic Fibrosis Related Diabetes. What this means for me is testing my blood sugars multiple times a day and giving myself insulin if need be. Not to mention making sure my blood sugar is also not too low where I have to get something in my system ASAP. This has been a real adjustment as I've never had to worry about this before. Let me tell you, it's not fun to have to poke yourself with needles multiple times a day and have to give yourself shots. Along with this, I am supposed to be eating as much as I possibly can because I'm supposed to be working on gaining 20 pounds. I had dropped a lot of weight this year and was told that if I couldn't gain the weight on my own that I would need to get a feeding tube. I was told it would help me get the necessary calories I would need to help get my weight up and keep me feeling strong. Being a female in this day and age and being told to gain weight is not easy. I'm having a really difficult time with this and am really trying to work with everyone, but I'm struggling. Because I was that sick and I wasn't gaining the weight, I got a feeding tube while I was in this last time. It was rather scary for me because I didn't want something else to help make this disease "real." I try to live my life as normally as possible and this was just something else that helped prove that my life is far from "normal." Not to mention because my lungs were so compromised from being sick, they were a bit concerned about having to put me under anesthesia and me not waking up well from it. They decided to go ahead with the procedure and I did almost end up being intubated and ending up in ICU for the night. However, they decided to use something called a "Bipap" machine to help apply positive pressure to my breathing and that seemed to help. I'm not completely understanding of what this machine does quite yet, but it's another new development that I've come home with. If you ever want to see what a medical supply warehouse looks like, just stop by sometime. :) Anyway, I now have the feeding tube and am supposed to give myself feedings while I sleep to help me gain the weight. Now, in true Nicki fashion, my tube is not working the way it's supposed to be, so I need to stop in and have it checked. So... eating as much during the day is still a priority, but I can now give myself supplemental feedings through the tube if need be. Although... you can also drink beer through that thing, so I guess there are some positives. :) J/k of course!

After my last IV drug treatments, I shake one more time, do my nebulizer for the night and take my other night time meds. I check my insulin one or more times and have a late night snack if need be or if wanted. Then I have to give myself a "feeding" through my tube, apply my bipap machine and try to get some sleep. My last drug is administered at either 10 or 11pm so that doesn't leave me much time to sleep between my night and morning doses.

So...that's a day in the life of Nicki at the moment. It's a bit of a job in itself and is quite overwhelming and stressful. I am trying to cope with it the best that I can, but I can certainly say that I've been awfully scared, humble and just plain exhausted these last few weeks. I absolutely appreciate all of the thoughts, prayers, flowers, gifts, visits and phone calls. That helps more then anyone can know. I am truly blessed with great family and friends in my life and I can honestly say that I don't think I would've made it this far with out all of you. I try to keep a smile on my face as much as I possibly can, but it's certainly getting harder with the disease progression and the new adjustments. Please consider donating to my team and help us find a cure. You can also join our team to walk as we can always use more team members.